update & feeling rough :(

sennacharib

The rheumy specialist nurse called me back on friday and was lovely. She has squeezed me in to see her on monday 26th september at 1.30pm. I wont be seeing a rheumatologist that day as they are booked up to eyeballs, but i explained that i have sweating profusely, rashes, upset tummy which we think is due to plaquenil and after 10 weeks that shouldnt be happening.

So she reduced me to one plaquenil a day and this is helping i am not as bad with side effects, plus im so sick of taking tablets its relief not to have that damn sherberty drink twice day lol

I also explained that when i get down to 20mg steriods all my pain returns with avengence and she said to call my GP and to say i need at least 20mg and to order another prescription so that i have enough. I left message with receptionist on friday evening as my GP was in surgery but going to call again tommorow to find out if she did get the message.

The specialist nurse also said we will more than likey knock the plaquenil on the head, and i said in letter i recieved from the locum rheumy i saw in june she mentioned that depending on my liver function test results as they were high, that methetrexte or sulphaszine may be an option ( sorry for spelling lol)

She also said bring the pain map, and to rpint off any photos of rashes, swelling etc so they can keep it on my files, and to show her on my phone too as they will be clearer on there. And to bring my diary to let her know whats been going on and where on body it hurts etc.

So all in all it was a good result, and she was so caring, it almost made me cry...I just feel so low today, i woke up in night for 3rd time running with pain in my hands, hips, elbows and ankles and i just think that for me, if i have to live the rest of my life like this in chronic pain whether it is RA or something else, im not sure i can...its alot to take on board and on the body too...and the drugs come with their own effects which arent great on the organs etc.

I just having a blubby day and my hubby who is great is i think sick of hearing it lol....bless him....he says he feels helpless he cant do anything...so it is tough on him too.

Thankyou so much for listening.

Hope your all in not too much pain today. Big hugs, Love senna xxxx

stickywicket

You've had a good appointment, Senna. Try to just hang on to that for the moment. The pain does last but the intensity doesn't. They will find some meds that do it for you and, once they've found them, and got you stabilised for some time, then you can start to think in terms of reducing them slowly. You'll still have flares from time to time but they will come and, after a while, go again. You have the support of a good husband beside you and that is worth so much. Face it together and, together, you'll learn to deal with it. I'm sure you can do this. Take care.

tkachev

Well done Senna. I'm glad you have been able to talk to someone. It was rally unfair for them to expect you to wait so long to see someone.

You wont have to spend the rest of your life like this...I can vouch for that.
Good result.

Elizabeth x

PatriciaH

Oh dear Senna. Poor you :sad:

What pain relief medication do you have?? You say that you are on steroids and plaquenil which will help with the inflammation but do you also take anything else to help you with the pain? I am in exactly the same situation as you and I just couldn't cope without oramorph (oral morphine). My doc gave this to me about a year ago (same time I was given steroids and still on them) and I have reduced the amount I take but still need it until they can find me something to stop my inflammation/pain/swelling.

I think all of us on here can well understand that today you just feel you can't stand anymore of it BUT believe me tomorrow is another day and once you have your pain level sorted you will feel a little better It is a long haul isn't it??

How wonderful that you have such a loving, supportive husband. Mine is too and I don't know how I would have coped without him. Please try to focus on that for the moment. That you have someone who loves you and wants to support you. I am also overwhelmed by the love and support of the group on here. You will ALWAYS get a 'listening ear' from someone on here.

I think the most important thing for the moment is to get your pain meds sorted. Perhaps your GP or your Rheumatology Nurse at your next appointment on the 26th will help you with that. Even though you will still have the symptoms the pain will be less and you will be able to cope better and function more albeit in a limited capacity FOR THE MOMENT. We all have to trust things will get better for us.

Take care and let us know how you get along.

Pat x

dorcas

Hi senna

I agree with what others have said... pain relief and getting on top of the inflammation is key to managing and controlling this condition.

Your nurse sounds really helpful and pro-active, which is wonderful.... and I'm sure she'll help you find the right balance of meds to knock arther on the head.

It is frustrating for family to watch our pain and it does engender feelings of helpless.... but the love, understanding and support of your hubby and family is helpful in itself .

Keep your chin up.... and keep posting.

Iris xxx

sennacharib

Thankyou so much for all your replies

I am waiting for the GP to call me back as the 8 day tramadol and 8 day paracetomal isnt really touching the pain i feel in my joints, also he did a prescription on friday for more steriods, but to stay on 20mg daily for 2 more weeks, then reduce to 15mg for 2 weeks then review, and rheumy nurse said at least 20mg, so atm im still in pain lol...

So when he calls back ill ask for more some painkillers to help with the tramadol, maybe as well as, possibly, so im just waiting to hear.

Once again thankyou for hearing me rant on and hugs to all...hope your all well today

Love senna xxxx